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Sophiekins

Celiac Disease: Not Just A Gi Problem

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I am so happy to see this thread and all the research articles that I can dig into :lol: . The vast majority of my symptoms were definitely neurological; the depression/anxiety, panic attacks, agoraphobia, "brain fog" (I LOVE that term!), severe migraines and extreme exhaustion. I never had the diarhea issue but was constipated instead, and significant weight-GAIN, not weight-loss.

Thanks, Sophiekins, for taking the time to research and share this information with us... I'm drinking it all in!

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Yeah...it's hard to tell what my problems come from. Even when I'm gluten free, soy free, dairy free I still am extremely forgetful and tired. But now my doctor thinks I have narcolepsy. I went through the sleep apnea hoops because my first sleep test said I had mild sleep apnea, but the CPAP didn't help so we're trying to figure out what is really making me tired.

Maybe if I tried harder to be gluten-free, CF, SF I'd be better but its sooo sooo hard! I can't live without my ice cream once in awhile!

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i told my otherwise wonderful gi doctor about my brain fog and mild depression, and he said that celiac wouldn't have anything to do with that... and my new family practice doctor hasn't had to deal with it yet, though i had a funny dermatitis of some sort, and the one associated with celiac disease never entered the conversation.

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Hi Heathen,

Please send your otherwise great GI to the link for the summary article in Helena's first post (post #2 in this thread). . .your doc is exactly who we want to educate!

The key to knowing whether your funny dermatitis was DH or not is in the appearance of the lesions: if they ooze yellowish fluid when you scratch, they are probably DH. They will also probably appear in roughly the same place on both arms (or legs).

Good luck! (Fingers crossed it's just funny dermatitis. . .)

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Sophie, great post!

I would like to add that a few months ago I went to see Dr Hadjivassiliou with my son (due to ataxia). By then I had read many of his papers and other research, including from these pages.

I had tears in my eyes when we met and I will be forever grateful to him for researching this subject and giving us his time.

Before I found out about gluten, my son had been doomed by the medical profession to a progressive neurological deterioration. The improvement on diet has been quite amazing (on diet since Sept 2005 and still improving). We also found out that my son has DQ1, not celiac. I couldn't put him back on gluten for the sake of antibody test, because we have more than a decade of his life to rebuild (if that's ever possible).

I had been compelled to start the diet as soon as I realised that it offered some hope, but I am also aware of many people who don't seem to understand the irreversible aspect of the autoimmune damage and hope that it won't happen, despite having symptoms.

Like many on this board, I now keep Dr Hadjivassiliou's research to hand and educate anyone in the medical profession whom we go to see with my son.

I still keep reading and still find amazing advice here.

Thank you all for sharing your experiences!

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Guest Kathy Ann
Yeah...it's hard to tell what my problems come from. Even when I'm gluten free, soy free, dairy free I still am extremely forgetful and tired. But now my doctor thinks I have narcolepsy. I went through the sleep apnea hoops because my first sleep test said I had mild sleep apnea, but the CPAP didn't help so we're trying to figure out what is really making me tired.

Maybe if I tried harder to be gluten-free, CF, SF I'd be better but its sooo sooo hard! I can't live without my ice cream once in awhile!

I did some research on the DQ1,6 gene and it has a REALLY high predisposition to narcolepsy. I thought that was interesting. Would it apply to you??

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BUMP :)

JUDY

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Funny you would mention lazy eye, and also Ehler's Danlos Type 3. I had a "lazy eye" as a teen . . . kind of an unusual time to develop one, I'd say -- usually they appear earlier. Also, I was just diagnosed with ED 3 by the geneticist. I now have developed (yet ANOTHER manifestation of this stupid disease, I guess, although I am SO diligent about remaining gluten-free) but my left eye has developed spasticity. So, when my Baclofen wears off, my left eye starts drifting out to the side. Trying to read makes me NAUSEOUS! I start to read, and my left eye drifts back about three words. I have to consciously bring it BACK to where I was, then it starts drifting again. I now have to see a neuropthmalogist. The hope is that they can inject either Baclofen or Botox into the muscle which has spasticity in order to keep it from turning me into a 1/2 wall-eyed bass.

I think that, maybe because I have a hammer now, everything is a nail! I had the most AMAZING experience at the geneticist's office. I first saw a genetic conselor -- I had NO IDEA that they had to have so much schooling to work in that capacity. The woman that I saw was not only intellingent, she was VERY intuitive. So many things that have occurred in my life, she started listing.

In the beginning of the session, I told her how apprehensive I was about seeing them . . . she said, "It's because you're afraid that I'm going to roll my eyes at you like a lot of the others have, I'll bet." I smiled and said, "Yes. I've had some bad experiences." She replied, "I'll bet. I can imagine you've had some HORRIBLE experiences. The average person has seen 8 or 9 doctors before they get to us." The MD who I saw was just as wonderful. He also told me that when a test that has been ordered is marked "cancelled" at the bottom of the report -- it's not because the DOCTOR has cancelled the test!! It's because the people drawing the blood either couldn't find or wouldn't take the time to find out how or where to send the blood! He said that from now on, I'm to get my blood drawn ONLY at one hospital here in Louisville, because he had it out with them, blew up, and evidently launched some potential legal ramifications from cancelling tests without consulting the prescribing MD. Make SURE that your lab tests aren't cancelled for that reason!

My lab only tested me for HLA DQ2 and DQ8 -- and I was negative for both. The phlebotomist couldn't find a "code" for HLA DQ1. She said that "she thought the test didn't exist." I told her it DID, I knew better.

If you are having multiple problems, I am a strong advocate for seeing a geneticist. I was blown away with the things that they were able to immediately know what to test for . . . it was just a VERY good experience.

Most who are familiar with me know that I have a boatload of neurological conditions that stem from "first high, then outrageously high" levels of antigliadin antibodies, according to my neurologist. Oddly, given that I had some neurological signs in 2000 which you wouldn't expect to be linked to this disease, I was just told by that physician that he thinks it was starting THEN. (PM me if you really want the gory details -- just don't want to post them for the world to see) It would make sense, then, why I have so many things that are permanent.

Sophiekins -- this IS a fantastic thread. For the longest time, I felt like a human anomaly. I seemed to be the only person whose only symptoms due to Celiac were neurological. It's cold comfort that I'm not alone. I am sorry for all who have neurological damage, as well. I know that it's scary, at best.

Surreygirl -- you were blessed enough to be able to see Dr. H? How FANASTIC for you and your son!! You must have been thrilled! I have tried to e-mail him to volunteer for research as a human guinea pig, but I keep sending it to the WRONG place.

Don't give up . . . NEVER give up. I have even volunteered to have my stem cells extracted and injected into my cerebellum as a research candidate. If they want to research that, I think that "Why NOT? It could possibly help me, AND it may help a LOT of people suffering from the neurological complications." My geneticist marked it in my chart . . . . .

Hang in there, all,

Love & Hugs,

Lynne

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HI Lynne,

We haven't been in touch for awhile. Sorry about that.

I am still in augh of you and your perserverance.

You are an inspiration to me.

hugs and love

will you pm me with the gorydetails. I sure know about all the other stuff unless there new things since we last spoke. I haven't heard the results of the MRI yet.

write when you feel up to it ok.

hugs and love

judy

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Hi Valerie,

Your headaches and muscle cramps are probably detox - your body will go through a kind of withdrawal over the first couple of months (if you've been very sick, it could be worse), but if you are getting more than one headache in ten days, you need to make some changes to your diet. Call your GI and ask for a referral to an experienced nutritionist who can help you sort out which changes you need to make. Before you go to see the nutritionist, keep a food diary for a week - note what you ate, how much you ate and when you ate it, as well as any headaches and cramping (time, intensity and duration), and try to avoid taking painkillers. . .I know its hard but they could be making the headaches worse (if you are really suffering, put your thumb between your eyebrows, right above your nose and press gently for a minute. . .the pain should ease for a bit). Remember that you probably won't get hungry for the first few months, so the headaches could be your body trying to tell you that you haven't eaten enough. Try and get a little fruit sugar into you every couple of hours - a small glass of juice, a handful of dried fruit, a small piece of fresh fruit (veggies work too if you're really not a fruit person, but you have to eat a few more) - to reassure your body that you haven't forgotten about it. Start each meal with a little bit of fruit sugar, and step up your potassium intake (either more bananas or a potassium supplement. . .just make sure the supplement is gluten-free) to ease the cramping. When you do get a cramp, warm the area (hot water bottle works well, but in a pinch, soak a washcloth in hot water, drop in a plastic bag and press against the area) and gently stretch and massage.

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Glad you're feeling better Valerie!

Nope, I'm not a doctor. I'm not even certified to do first aid (I know, I know, bad citizen me. . .I'll get there eventually, I promise). What I am is an ex-dancer, meaning I spent ten years paying attention to absolutely everything that passed my lips (when you spend six hours a day in a dance studio, you have to make sure that you're eating enough calories of the right sort to make sure you don't gain unneccessary weight and that your body gets enough nutrition), and dealing with an awful lot of muscle cramps when I went through puberty. . .dancers develop muscles differently, and if your bones grow and your muscles don't, puberty is veeery painful - I remember hearing some of the girls sobbing at night, it hurt so much. So I learned a lot about how to take care of cramps. . .comes in handy from time to time. I'm also an extremely sensitive celiac with neuro symptoms, meaning I get migraines regularly and went through a b*&ch of a detox period. . .and do virtually every time I get glutened. So I can sympathise.

Once you're through the detox, your body will tell you what it needs, it's just a matter of learning to understand it. And a qualified, experienced nutritionist can help you with that. And if you listen to your body, I can guarantee that you will feel better (and be healthier) than you ever have before. (And I'm serious. . .six years gluten-free and I've had maybe half a dozen colds. . .nothing serious enough to make me miss more than a half day of work). It's hard work, but it really is worth it.

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My physical therapist was just telling me how he has a lot of ex-dancer patients: apparently, they are much looser in the joints than most, but after they retire from dancing, they don't maintain the musculature to support the laxity, and they have terrible back problems. Hope that's not you! He did say that they are among the easiest of all his patients to improve, as they have the discipline to actually do ALL of the recommended home exercises, whereas most people slough off.

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Ironically, my back is fine! (I always had a loose back and had to do lots of yoga to keep it in shape even when I was dancing full time. . .the muscles you have trouble with tend to be the ones you had to coax into performing, not the ones with natural dance talent and for most people, that's their backs). But I agree. . .a knowledgeable physiotherapist is an ex-dancer's best friend. . .

Unfortunately, I retired (rather abruptly) from dancing because of a broken ankle which put a full stop on my developing career (and most physical activity from the waist down for about five years). My upper body gets well looked after because it drives me crazy not to be able to do anything, so I exercised for years from the waist up. I'm now at the point (after years of physio. . .grrr) where I can actually go for a gentle 15 minute run and still walk the next day, though they tell me that this is as good as it is ever going to get, without surgery (which is kind of a demotivator for all those home-exercises. . .). Apart from that, I've been fairly lucky to stay in relatively good working order (no promises in another ten years though,) but when I wonder when get out of bed in the morning. . .snap crackle pop have nothing on my hips and knees. . .

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Weeelll. . .generally they do, but ankles and wrists are awkward things to break, and because I broke a teeny bone that no-one but dancers break, and the doctor who checked me out (who didn't normally treat dancers. . .we were on tour) didn't find the broken bone on x-ray (you need to do a radioactive bone scan to see the break) and no-one actually did the bone scan for four months (when my "torn ligaments" weren't improving) when it was too late to do anything to fix the bone, apart, that is, from going in surgically and breaking it again (which they couldn't guarantee would work. . .and ouch. . .). . .another case of M.D. meaning More Damage. On the bright side, the partner who dropped me and broke it in the first place has had a long and healthy career ever since, and takes fabulous care of his partners. . .that's a good thing, right? (And who cares that I couldn't walk for a year?) . . .

Sorry. .. that last bit came out a bit bitter. . .I'm not really, I love my life. . .it's just raining and cold and I overdid it this week with the high heels, so I'm in a bit of pain, and therefore a bit bitter.

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I totally understand! I was hit-and-run by a car in January and my shoulder was dislocated and really mangled (it didn't help that I sat in a rather empty ER for 3 hours before it was reset, either). The first ortho who saw me didn't want to bother with an MRI. Turned out, I had torn tendons and cartilage, and one of the tendons was torn off the bone. Great injury for a violinist, eh?

A week after the accident, I had bloodwork that showed an IgG off the charts, at which point, I went off gluten, even though the dermatologist insisted that it wasn't celiac. It's been quite a year, really.

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Thank you for writing this post. Once again it's so comforting to find other people out there who understand the absolute frustration that goes with not only dealing with this terrible illness, but also in trying to work with a world that often doesn't understand. It's great to know we are not alone.

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Can you guys check out this post in Related Disorders and Research:

http://www.glutenfreeforum.com/index.php?s...mp;#entry246048

My aunt has completely lost her short term memory and I just found out she has a "mild" case of celiacs but her symptoms aren't too bad so she hasn't been following the diet. aHHHHHHHHHHHHHHH! Any and all help and comments would be appreciated on this one!

I am FREAKING out!

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Bev,

I'm floored by your post about your aunt. It sounds exactly like my mom.

My mom remembers everything from years ago, but is frequently forgetting about conversations we had last week. It seems that the older memories are in there good, but the more recent ones get confused or lost.

I really believe my mom has Celiac. I've written here before about her many symptoms that go back years. She was tested after I was diagnosed, but the fool doctor only ran one test--not the whole panel. So, she's going with that, and believing there's no problem.

I don't know what else you can do--I found that you can talk till you're blue in the face, but if someone feels that they aren't "really that sick" or don't want to change their diet, they won't.

I know you're upset--I wish I could offer more. :)

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Thank you for putting into words what I have been living for the last 5 years. I was told it could be Lymes disease, arthritis, or just aging. I kept telling doctors that my bones ached and that I was having difficulty concentrating, no interest in anything. I think that they thought that I was crazy. Your post was very reassuring. Now i know that I'm not crazy!

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Hi, Sue, and welcome!

You might want to check out the gazillion-page "OMG--I might be on to Something" thread--several people on there do have Lyme disease as well as celiac, and they have been doing an amazing amount of research and posting it on that thread!

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Bev,

I don't know what else you can do--I found that you can talk till you're blue in the face, but if someone feels that they aren't "really that sick" or don't want to change their diet, they won't.

I know you're upset--I wish I could offer more. :)

Thanks Patti- I know. Sometimes I feel like the celiac police. :(

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Hi. Just adding to the general chorus - yes, also lazy right eye. and two children with hypermobility. which I had to some degree myself as a child. They are more pronounced - but I had been on 40 years of gluten when I had them and was still on it. and my mother (it all seems to come down the female line) with a very strange kind of dementia indeed. Had it for 15 years and is better now than when she started, thanks to serotonin reuptake inhibitors.

all v v strange and interesting.

thanks for the posts.

SandraB

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I've copied some of this thread and pasted it into an email so I can print it off for my doctor, who is always interested in leaning more about it.

Thanks for starting this thread!!!!!!!!!

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